Can You Be Hyper Without The Pots - Tt Good But Symptoms Bad

[E246]

Having a real struggle with surges that go on for hours and doctors who don't get how unbearable it is and fob me off.

Managed to get an emergency appointment before christmas and am now taking Fludrocortisone which has had an amazing impact.

I had already started the tablets before the appointment and the TTest on the tablets was fine and did not show pots this time, in fact a number of the TT's were negative over the last year. Of course i was on bb for one and had tights on for another and was in remission during another but the next day was so ill i vomited if i stood up.

So, this doc was slightly questioning my diagnosis.

I have posted before that my HR is ok when i stand maybe doesn't go over 100 unless i exert like the stairs. Even if my HR stays lowish, i still get the normal pots symptoms - chest pain sob. But some days it does always go and i have no doubt about the diagnosis.

But while the postural bit is a bit better the surges have become so bad i have been house bound for weeks. I have never experienced anything more agonising in my life and i had 2 natural births. The adrenaline made me feel so ill.

This has been a gradual build up over lots of years and the pots diagnosis was a relief.

I went for a mile and a half walk one day -HR never over 100 - then was ill for 4 days?

So,

Does anyone else have surges that last this long whilst not having postural symptoms too badly generally?

Does anyone else have intermittent symptoms?

Does anyone else often have good TT results?

Thanks and Happy Christmas.

[MomtoGiuliana]

Being on a med for POTS at the time of the TTT could definitely have caused the normal results you had with HR.

I don't have surges unless I have had a general increase in intensity of POTS symptoms of all kinds. I can say though that even once treated with a BB I continued to have other POTS symptoms even tho my HR was good/normal.

[Hope]

to MomtoGiuliana-

When you were treated with BB and continued to have other POTS symptoms, did you have your meds changed? I too am on a BB with Midodrine and my heart rate and blood pressure are reasonable,but I am still having an array of POTS symptoms. I am thinking of asking for an SSRI but don't want any more problems than I have already. I want to do what I can to get back to a reasonably normal life. Just want some feedback from others who have tried different meds.